Re: NEW TO GROUP

[Guest guest]

Hi Patti,

Your son's symptoms & results from tests sound quite similar to my

daughter's. She was vomiting alot around Christmas time. Did blood

tests & fecal samples...ALL negative for celiac. Did an endoscopy in

January...proved inconclusive--2 of 3 secretins were low, the other

was normal, villi looked fine. Did the gene testing...showed Gabby

has one of 2 genes for celiac. So, we have gone gluten free for 2

months so far, planning on doing 1 year & retesting. Right now they

are saying Gabby probably has a gluten intolerance, not actual

celiac.

Have you put your son on a gluten free diet yet? I would have the

gene test run. Compared to all the other invasive stuff you've done,

a blood-draw is a piece of cake (gluten-free, of course!) Gabby

didn't have solid stools for about a year, had not gained weight or

grown since August 2005. Recently, she has put on just over a pound

& grown 1/4 " ! Gabby is 3 yr 7 months.

Sorry your son has gone thru so much & is still in pain. I hope it's

as " simple " as celiac! Praying for your family, Laurel

>

> Hi. My name is Patti and I'm hoping to get some advice so I can

help

> my son. He is 6 years old and the last 6 months have been

horrible.

> I've been to 2 other groups trying to get answers and one of them

> keeps saying this is the room to go. The other one has been

> extremely helpful, but now the situation deepens a little.

> Here is a brief description: six months ago he started vomiting.

It

> went on for a month along with diahrea. I had suspected celiac

> before and now I did again. I demanded a blood test. 2 out of 3

> came out positive. He went to a pedi. gastro. He did an

endoscopy

> and the biopsies came back negative. I did more blood tests and

> allergy tests and a stool sample. All came back negative or

normal,

> except the other celiac test( a more sensitive one). That showed

> High levels of IgG. The gastro doctor suggested a colonoscopy.

That

> showed microscopic colitis. At first he said he could cure it.

Now

> I just spoke with him again and he said it may NOT go away.

> Unfortunately until I met my husband I have never heard of

celiac.

> His brother has it.

> My son hasn't had the gene test done yet for celiac. I was going

to

> have it done in 2 weeks when he goes back. Should I still have

the

> gene test done?

>

> My son doesn't vomit anymore, but hasn't had a solid stool for

> months. Gets bloated, has a constant pain on both sides of

stomach.

>

> What does that sound like to you?

>

> Anything would help me to go in the right direction to help my son.

> Thank you

> Patti

>

[Guest guest]

Patti, My brief advice to you is have him go gluten free ASAP.

His story sounds like mine. I was only positive on one blood

test. My biopsy came back negative. Took a small bowel follow

through. Also negative. Colonoscopy revealed lymphocytic colitis

(a form of microscopic colitis). Many many LC sufferers are helped

by a GF diet. So, I went GF even though the doctors were saying

" not celiac, here take these meds instead of the hassle of GF

eating " . But guess what? With GF eating I started to feel better

in DAYS! DAYS, I tell you. After being miserable for years, and

totally and completely miserable for months. And guess what else?

My antibodies went down to undetectable levels after only 3 months

of GF eating. So, I consider myself the luckiest celiac on the

planet - I got diagnosed by blood tests before the visible damage

was done!

Also - the other thing to completely avoid with lymphocytic

colitis is all NSAIDs (aspirin, ibuprofen, naproxen, aleve, etc).

I hope he feels better soon!

Esther in RI

>

> I had suspected celiac

> before and now I did again. I demanded a blood test. 2 out of 3

> came out positive. He went to a pedi. gastro. He did an endoscopy

> and the biopsies came back negative. I did more blood tests and

> allergy tests and a stool sample. All came back negative or normal,

> except the other celiac test( a more sensitive one). That showed

> High levels of IgG. The gastro doctor suggested a colonoscopy. That

> showed microscopic colitis.

[Guest guest]

Esther,

I'm just extremely lost and I think that's a good idea and I probably

will start him on that ASAP. My thing is he's not calling it that

lymphocytic colitis. He's calling it a small form of ulcerative

colitis, but with his name " indeterminable colitis " . I thank god

that I already have another appointment for a second opinion. It's

supposed to be at a one of the best hospitals, the Boston Childrens

Hospital. So hopefully I can get a good answer, not what this one is

saying.

I just hate to see him miserable and now he's getting more and more

impatient and lashing out too. and that is definitely not him.

Thank you for your advice.

Patti

>

> Patti, My brief advice to you is have him go gluten free ASAP.

>

> His story sounds like mine. I was only positive on one blood

> test. My biopsy came back negative. Took a small bowel follow

> through. Also negative. Colonoscopy revealed lymphocytic colitis

> (a form of microscopic colitis). Many many LC sufferers are helped

> by a GF diet. So, I went GF even though the doctors were saying

> " not celiac, here take these meds instead of the hassle of GF

> eating " . But guess what? With GF eating I started to feel better

> in DAYS! DAYS, I tell you. After being miserable for years, and

> totally and completely miserable for months. And guess what else?

> My antibodies went down to undetectable levels after only 3 months

> of GF eating. So, I consider myself the luckiest celiac on the

> planet - I got diagnosed by blood tests before the visible damage

> was done!

>

> Also - the other thing to completely avoid with lymphocytic

> colitis is all NSAIDs (aspirin, ibuprofen, naproxen, aleve, etc).

>

> I hope he feels better soon!

> Esther in RI

>

[Guest guest]

Thank you . I will definitely have it done then.

Patti

> >

> > Hi. My name is Patti and I'm hoping to get some advice so I can

> help

> > my son. He is 6 years old and the last 6 months have been

> horrible.

> > I've been to 2 other groups trying to get answers and one of them

> > keeps saying this is the room to go. The other one has been

> > extremely helpful, but now the situation deepens a little.

> > Here is a brief description: six months ago he started

vomiting.

> It

> > went on for a month along with diahrea. I had suspected celiac

> > before and now I did again. I demanded a blood test. 2 out of 3

> > came out positive. He went to a pedi. gastro. He did an

> endoscopy

> > and the biopsies came back negative. I did more blood tests and

> > allergy tests and a stool sample. All came back negative or

> normal,

> > except the other celiac test( a more sensitive one). That showed

> > High levels of IgG. The gastro doctor suggested a colonoscopy.

> That

> > showed microscopic colitis. At first he said he could cure it.

> Now

> > I just spoke with him again and he said it may NOT go away.

> > Unfortunately until I met my husband I have never heard of

> celiac.

> > His brother has it.

> > My son hasn't had the gene test done yet for celiac. I was going

> to

> > have it done in 2 weeks when he goes back. Should I still have

> the

> > gene test done?

> >

> > My son doesn't vomit anymore, but hasn't had a solid stool for

> > months. Gets bloated, has a constant pain on both sides of

> stomach.

> >

> > What does that sound like to you?

> >

> > Anything would help me to go in the right direction to help my

son.

> > Thank you

> > Patti

> >

>

[Guest guest]

Laurel,

Thank you very much. No he hasn't gone gluten free yet, but I'm

thinking about doing it even before I have the gene test done. I'm

very concerned about him and just need him to feel better.

I am going for a second opinion and hopefuly we'll see what happens.

I hope everything works out with your daughter. It sucks to see them

sick so young.

Patti

> >

> > Hi. My name is Patti and I'm hoping to get some advice so I can

> help

> > my son. He is 6 years old and the last 6 months have been

> horrible.

> > I've been to 2 other groups trying to get answers and one of them

> > keeps saying this is the room to go. The other one has been

> > extremely helpful, but now the situation deepens a little.

> > Here is a brief description: six months ago he started

vomiting.

> It

> > went on for a month along with diahrea. I had suspected celiac

> > before and now I did again. I demanded a blood test. 2 out of 3

> > came out positive. He went to a pedi. gastro. He did an

> endoscopy

> > and the biopsies came back negative. I did more blood tests and

> > allergy tests and a stool sample. All came back negative or

> normal,

> > except the other celiac test( a more sensitive one). That showed

> > High levels of IgG. The gastro doctor suggested a colonoscopy.

> That

> > showed microscopic colitis. At first he said he could cure it.

> Now

> > I just spoke with him again and he said it may NOT go away.

> > Unfortunately until I met my husband I have never heard of

> celiac.

> > His brother has it.

> > My son hasn't had the gene test done yet for celiac. I was going

> to

> > have it done in 2 weeks when he goes back. Should I still have

> the

> > gene test done?

> >

> > My son doesn't vomit anymore, but hasn't had a solid stool for

> > months. Gets bloated, has a constant pain on both sides of

> stomach.

> >

> > What does that sound like to you?

> >

> > Anything would help me to go in the right direction to help my

son.

> > Thank you

> > Patti

> >

>

[Guest guest]

My oldest test came back negative, he has the gene. I have done some

reading and found that the blood test are less than 40% effective in

those Celiacs with partial villi atrophy or patchy villi atrophy. The

test are not 100% accurate, the biopsy itself is not 100% accurate.

I will be putting my oldest on the GF diet for 30days after Cub Scout

camp. He isn't " sick " , he has constipation issues and is in the 5%

for weight.

My middle child dx'd with CD without biopsy has the Gene, Pos IGG and

IGA deficient which is why the other CD test came back negative. He

was so sick, I was not about to put him through a biospy and we had

gone GF at the recommendation of the pediatrician thinking she had

ordered the right test and hadn't the full panel was done 54 days

later by a Pedi GI. And neither of them caught the IGA deficiency,

Dr. Fasano did that and he supported not doing the biopsy until we

were ready.

I highly suggest the GF diet to see if it makes your son better. And

if he gets better, you've found your answer regardless of what the

test say. Our pediatrician is happy with the results of the GF diet

and is content with our not wanting the biopsy. She has another CD

patient on the GF diet with out " firm " medical dx of the gold standard.

I don't know what other forums you've gone to but braintalk is useful

in the medical stuff.

Rejoyce

Winchester, VA

[Guest guest]

My oldest test came back negative, he has the gene. I have done some

reading and found that the blood test are less than 40% effective in

those Celiacs with partial villi atrophy or patchy villi atrophy. The

test are not 100% accurate, the biopsy itself is not 100% accurate.

I will be putting my oldest on the GF diet for 30days after Cub Scout

camp. He isn't " sick " , he has constipation issues and is in the 5%

for weight.

My middle child dx'd with CD without biopsy has the Gene, Pos IGG and

IGA deficient which is why the other CD test came back negative. He

was so sick, I was not about to put him through a biospy and we had

gone GF at the recommendation of the pediatrician thinking she had

ordered the right test and hadn't the full panel was done 54 days

later by a Pedi GI. And neither of them caught the IGA deficiency,

Dr. Fasano did that and he supported not doing the biopsy until we

were ready.

I highly suggest the GF diet to see if it makes your son better. And

if he gets better, you've found your answer regardless of what the

test say. Our pediatrician is happy with the results of the GF diet

and is content with our not wanting the biopsy. She has another CD

patient on the GF diet with out " firm " medical dx of the gold standard.

I don't know what other forums you've gone to but braintalk is useful

in the medical stuff.

Rejoyce

Winchester, VA

[Guest guest]

My oldest test came back negative, he has the gene. I have done some

reading and found that the blood test are less than 40% effective in

those Celiacs with partial villi atrophy or patchy villi atrophy. The

test are not 100% accurate, the biopsy itself is not 100% accurate.

I will be putting my oldest on the GF diet for 30days after Cub Scout

camp. He isn't " sick " , he has constipation issues and is in the 5%

for weight.

My middle child dx'd with CD without biopsy has the Gene, Pos IGG and

IGA deficient which is why the other CD test came back negative. He

was so sick, I was not about to put him through a biospy and we had

gone GF at the recommendation of the pediatrician thinking she had

ordered the right test and hadn't the full panel was done 54 days

later by a Pedi GI. And neither of them caught the IGA deficiency,

Dr. Fasano did that and he supported not doing the biopsy until we

were ready.

I highly suggest the GF diet to see if it makes your son better. And

if he gets better, you've found your answer regardless of what the

test say. Our pediatrician is happy with the results of the GF diet

and is content with our not wanting the biopsy. She has another CD

patient on the GF diet with out " firm " medical dx of the gold standard.

I don't know what other forums you've gone to but braintalk is useful

in the medical stuff.

Rejoyce

Winchester, VA

[Guest guest]

Somehow I didn't think I got this intro, so I missed saying " welcome to the

group. "

I'm Jill, mom to a D/HOH 15-year-old high school sophomore. Ian has a

moderate loss, is aided and is mainstreamed in our local high school. We also

have

, a hearing 12-year-old who thinks she is really 25. (grin)

This is a quick note of welcome, since I need to get back to work. (Betcha

no one thought I was capable of such a short note, huh? LOL)

Again, welcome, I know you'll find it a warm and supportive place. I do.

Best -- Jill

[Guest guest]

Somehow I didn't think I got this intro, so I missed saying " welcome to the

group. "

I'm Jill, mom to a D/HOH 15-year-old high school sophomore. Ian has a

moderate loss, is aided and is mainstreamed in our local high school. We also

have

, a hearing 12-year-old who thinks she is really 25. (grin)

This is a quick note of welcome, since I need to get back to work. (Betcha

no one thought I was capable of such a short note, huh? LOL)

Again, welcome, I know you'll find it a warm and supportive place. I do.

Best -- Jill

[Guest guest]

Somehow I didn't think I got this intro, so I missed saying " welcome to the

group. "

I'm Jill, mom to a D/HOH 15-year-old high school sophomore. Ian has a

moderate loss, is aided and is mainstreamed in our local high school. We also

have

, a hearing 12-year-old who thinks she is really 25. (grin)

This is a quick note of welcome, since I need to get back to work. (Betcha

no one thought I was capable of such a short note, huh? LOL)

Again, welcome, I know you'll find it a warm and supportive place. I do.

Best -- Jill

[Guest guest]

Hi and everyone else- welcome! I'm Barbara, mom to Tom (13) and

Sam (11). They both have hearing loss. Tom has a cochlear implant -

his surgery was about 6-1/2 months ago; Sam currently wears two hearing

aids but pending a positive ruling from our insurance, will have his

surgery this coming Wednesday! We're in western New Hampshire so not

too far from you guys.

I'm glad you're here and that you found us!

Barbara

Kenney wrote:

> Hello!

> My name is and I am new to the group. My 18

> month old daughter has sensoneural hearing loss in

> both ears. She has been weating hearing aids since

> she was about 4 months old.

> A friend of mine whom I met in a program in Boston

> alerted me to your list-serve.

> I look forward to being part of the group.

>

>

> M. Kenney

>

[Guest guest]

Hi and everyone else- welcome! I'm Barbara, mom to Tom (13) and

Sam (11). They both have hearing loss. Tom has a cochlear implant -

his surgery was about 6-1/2 months ago; Sam currently wears two hearing

aids but pending a positive ruling from our insurance, will have his

surgery this coming Wednesday! We're in western New Hampshire so not

too far from you guys.

I'm glad you're here and that you found us!

Barbara

Kenney wrote:

> Hello!

> My name is and I am new to the group. My 18

> month old daughter has sensoneural hearing loss in

> both ears. She has been weating hearing aids since

> she was about 4 months old.

> A friend of mine whom I met in a program in Boston

> alerted me to your list-serve.

> I look forward to being part of the group.

>

>

> M. Kenney

>

[Guest guest]

Hi and everyone else- welcome! I'm Barbara, mom to Tom (13) and

Sam (11). They both have hearing loss. Tom has a cochlear implant -

his surgery was about 6-1/2 months ago; Sam currently wears two hearing

aids but pending a positive ruling from our insurance, will have his

surgery this coming Wednesday! We're in western New Hampshire so not

too far from you guys.

I'm glad you're here and that you found us!

Barbara

Kenney wrote:

> Hello!

> My name is and I am new to the group. My 18

> month old daughter has sensoneural hearing loss in

> both ears. She has been weating hearing aids since

> she was about 4 months old.

> A friend of mine whom I met in a program in Boston

> alerted me to your list-serve.

> I look forward to being part of the group.

>

>

> M. Kenney

>

[Guest guest]

Welcome, ! Do you live in the Boston area? I live in the western

suburbs. My son is now seven, with severe/profound SNHL, and has been

wearing his aids since 3 months.

You're in the right place!

Stefanie

Mom to Ben, 7, and Isabella, 10

on 5/5/06 10:48 AM, Kenney at kenneykr@... wrote:

> Hello!

> My name is and I am new to the group. My 18

> month old daughter has sensoneural hearing loss in

> both ears. She has been weating hearing aids since

> she was about 4 months old.

> A friend of mine whom I met in a program in Boston

> alerted me to your list-serve.

> I look forward to being part of the group.

>

>

> M. Kenney

[Guest guest]

Welcome, ! Do you live in the Boston area? I live in the western

suburbs. My son is now seven, with severe/profound SNHL, and has been

wearing his aids since 3 months.

You're in the right place!

Stefanie

Mom to Ben, 7, and Isabella, 10

on 5/5/06 10:48 AM, Kenney at kenneykr@... wrote:

> Hello!

> My name is and I am new to the group. My 18

> month old daughter has sensoneural hearing loss in

> both ears. She has been weating hearing aids since

> she was about 4 months old.

> A friend of mine whom I met in a program in Boston

> alerted me to your list-serve.

> I look forward to being part of the group.

>

>

> M. Kenney

[Guest guest]

Welcome, ! Do you live in the Boston area? I live in the western

suburbs. My son is now seven, with severe/profound SNHL, and has been

wearing his aids since 3 months.

You're in the right place!

Stefanie

Mom to Ben, 7, and Isabella, 10

on 5/5/06 10:48 AM, Kenney at kenneykr@... wrote:

> Hello!

> My name is and I am new to the group. My 18

> month old daughter has sensoneural hearing loss in

> both ears. She has been weating hearing aids since

> she was about 4 months old.

> A friend of mine whom I met in a program in Boston

> alerted me to your list-serve.

> I look forward to being part of the group.

>

>

> M. Kenney

[Guest guest]

Hi ,

Welcome to the group! I'm Kerry, mom to Hadley who is 4 1/2 years old

and has been wearing hearing aids since six months for her severe

bilateral hearing loss. We live in Massachusetts, on the South Shore,

but travel to Gloucester for weekly auditory-verbal therapy sessions.

There are a bunch of other people in this group from the Boston area and

New England.

Kerry

new to group

Hello!

My name is and I am new to the group. My 18

month old daughter has sensoneural hearing loss in

both ears. She has been weating hearing aids since

she was about 4 months old.

A friend of mine whom I met in a program in Boston

alerted me to your list-serve.

I look forward to being part of the group.

M. Kenney

[Guest guest]

Hi ,

Welcome to the group! I'm Kerry, mom to Hadley who is 4 1/2 years old

and has been wearing hearing aids since six months for her severe

bilateral hearing loss. We live in Massachusetts, on the South Shore,

but travel to Gloucester for weekly auditory-verbal therapy sessions.

There are a bunch of other people in this group from the Boston area and

New England.

Kerry

new to group

Hello!

My name is and I am new to the group. My 18

month old daughter has sensoneural hearing loss in

both ears. She has been weating hearing aids since

she was about 4 months old.

A friend of mine whom I met in a program in Boston

alerted me to your list-serve.

I look forward to being part of the group.

M. Kenney

[Guest guest]

Hi ,

Welcome to the group! I'm Kerry, mom to Hadley who is 4 1/2 years old

and has been wearing hearing aids since six months for her severe

bilateral hearing loss. We live in Massachusetts, on the South Shore,

but travel to Gloucester for weekly auditory-verbal therapy sessions.

There are a bunch of other people in this group from the Boston area and

New England.

Kerry

new to group

Hello!

My name is and I am new to the group. My 18

month old daughter has sensoneural hearing loss in

both ears. She has been weating hearing aids since

she was about 4 months old.

A friend of mine whom I met in a program in Boston

alerted me to your list-serve.

I look forward to being part of the group.

M. Kenney

[Guest guest]

Hello ,

Welcome to the group!! My name is , mother of Alyanna 7, severe-profound

hearing loss, 4 & 1 hearing. I've been a member for a couple of

weeks and I can already tell you...you have found such a great group of people

that will try to answer any question you have.

My daughter wears hearing aides on both ears but I'm in the process of getting

a consult to get info on cochlear implants. I'm kind of excited but soooo

nervous at the same time.

Like I mentioned earlier, welcome and feel free to ask or share anything you

want!!!

Blessings

in FL

Kenney wrote:

Hello!

My name is and I am new to the group. My 18

month old daughter has sensoneural hearing loss in

both ears. She has been weating hearing aids since

she was about 4 months old.

A friend of mine whom I met in a program in Boston

alerted me to your list-serve.

I look forward to being part of the group.

M. Kenney

__________________________________________________

[Guest guest]

Hello ,

Welcome to the group!! My name is , mother of Alyanna 7, severe-profound

hearing loss, 4 & 1 hearing. I've been a member for a couple of

weeks and I can already tell you...you have found such a great group of people

that will try to answer any question you have.

My daughter wears hearing aides on both ears but I'm in the process of getting

a consult to get info on cochlear implants. I'm kind of excited but soooo

nervous at the same time.

Like I mentioned earlier, welcome and feel free to ask or share anything you

want!!!

Blessings

in FL

Kenney wrote:

Hello!

My name is and I am new to the group. My 18

month old daughter has sensoneural hearing loss in

both ears. She has been weating hearing aids since

she was about 4 months old.

A friend of mine whom I met in a program in Boston

alerted me to your list-serve.

I look forward to being part of the group.

M. Kenney

__________________________________________________

[Guest guest]

Hello ,

Welcome to the group!! My name is , mother of Alyanna 7, severe-profound

hearing loss, 4 & 1 hearing. I've been a member for a couple of

weeks and I can already tell you...you have found such a great group of people

that will try to answer any question you have.

My daughter wears hearing aides on both ears but I'm in the process of getting

a consult to get info on cochlear implants. I'm kind of excited but soooo

nervous at the same time.

Like I mentioned earlier, welcome and feel free to ask or share anything you

want!!!

Blessings

in FL

Kenney wrote:

Hello!

My name is and I am new to the group. My 18

month old daughter has sensoneural hearing loss in

both ears. She has been weating hearing aids since

she was about 4 months old.

A friend of mine whom I met in a program in Boston

alerted me to your list-serve.

I look forward to being part of the group.

M. Kenney

__________________________________________________

[Guest guest]

Sue

The problem here with looking only at the diet is this----If a person has autoimmune antibodies to their Intrinsic Factor in the gut, they may have a condition known as Pernicious Anemia. This means that, even though they are taking in enormous amts of the B 12. they are not processing or absorbing any of it, and never will again, more than likely. Celiac Disease is also very suggestive of this. There is blood testing for both of these conditions, i.e., antibodies. The Schilling Test is the most indicative of a B12 deficiency, as the B12 Serum Test simply isn't very showing on this one, in some people. Celiac has specific antibodies testing, and you can't consume grains, particularly wheat, rye, spelt, so on.

Re: Re: New to Group

Thanks Dawn! I eat tons of yogurt, fish, clam sauce, and chicken so sounds like I am ok there...what about the Ferritin you mentioned? What is thay and why important?I wonder if lack of B12 leads to memory loss and confusion in many folks these day ... There seems to be an “epidemic!” :)sue

[Guest guest]

Hi ,

Is the Schilling Test a blood test any lab can do?

Haven’t heard of that one...

Sue

Sue

The problem here with looking only at the diet is this----If a person has autoimmune antibodies to their Intrinsic Factor in the gut, they may have a condition known as Pernicious Anemia. This means that, even though they are taking in enormous amts of the B 12. they are not processing or absorbing any of it, and never will again, more than likely. Celiac Disease is also very suggestive of this. There is blood testing for both of these conditions, i.e., antibodies. The Schilling Test is the most indicative of a B12 deficiency, as the B12 Serum Test simply isn't very showing on this one, in some people. Celiac has specific antibodies testing, and you can't consume grains, particularly wheat, rye, spelt, so on.

Re: Re: New to Group

Thanks Dawn! I eat tons of yogurt, fish, clam sauce, and chicken so sounds like I am ok there...what about the Ferritin you mentioned? What is thay and why important?

I wonder if lack of B12 leads to memory loss and confusion in many folks these day ... There seems to be an “epidemic!”

sue